(A note on Emma’s post. Because this is a fictitious dialogue that Emma wrote, for clarity’s sake, I asked her if it was okay to put the Autistic person’s words and thoughts in italics and the non autistic’s words in quotation marks. She agreed. My part of the conversation is in parentheses.)

For today’s blog post, let’s pretend you are the Autistic one and I should be the non autistic.

“Oh dear! Why are you hurting yourself?”

(I asked Emma whether the Autistic person could use spoken language to speak.)

You can’t speak and I will talk for both of us, it will be more authentic that way. Maybe you talk, but not with the words that best describe what’s in your mind.

“I don’t understand, do you want to go outside? Why are you biting yourself? Does that mean you do?”

You are thinking about expectations and how hitting yourself takes away the pain of not being understood and unable to say the words that will help.

“Here! We will go outside. It’s a beautiful day.”

I don’t want to go outside. I want to read a story.

Pointless bottling emotions of endless frustration cause words to wither in the recesses of the mind. Biting becomes the only way to stay rooted, but causes everyone watching to respond in loud voices of angry fear. Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.

Caution is needed whenever we decide we know what is in the mind of another human being.

Emma wrote this after having a very rough night over the weekend. I asked her if it was okay to post her beautiful words here and she agreed. I asked because there was a time before we had found a way to support Emma’s outpouring of words, before she was able to write, before we were able to understand, before we understood… those were the times when nights such as the one she is referring to were even more devastating for all of us and our assumptions about what might be going on were so often wrong. Emma agreed to post this because, “It’s important that other parents understand.” The problem with the assumptions we made was that they often led us to then behave accordingly, even without meaning to, they affected how we responded to her.

We might have thought – this is a manipulation, she is doing this to us. We are being held hostage to her screams. We would mistake her terror for manipulation. We might withhold our love in anger. We might assume that to not do so was giving in or condoning the “behavior”. We might do any number of things to “show” her that this way of being was unacceptable. Except that this “way of being” was so beyond the scope of our experiences, so beyond what we could make sense of.

“Pounding terror is all that remains.”

And so I remembered afterward the comments from this post, “What Others Had to Say: Love, Overwhelm, Violence” and all the people who so generously opened up their lives and wrote about their experiences with being overwhelmed and no longer able to cope. That point when feelings completely take over and all we can do is weather the storm. Emily K. wrote: “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

And she also wrote this: “Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.”

And this: “You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.”

And this: “Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me.”

And this: “I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.”

And THIS. This is SO important: “Don’t ask me questions. If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again.“

And this: “Don’t try to distract me.”

And this: “Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.”

And finally, this: “Please give me time to process.”

I would like to report here that I remembered each and every one of these things and that I put them all into action, but I didn’t. What I did do was try to remain calm and loving. And when my calm began to fray, I tried to remove myself, while reminding her of my love. I did a number of things right, and I made a number of mistakes. We are all learning here. When calm was restored Emma said she wanted to write about “the upheaval from last night.” This was in response to my question, “Is there something in particular you want to talk about this morning or would you prefer we discuss an article from the New York Times?

I was surprised she wanted to talk about it. And then she wrote those beautiful words, which I can only describe as less prose and more poetry, a song, really. A song borne of experience, despair, and transformed into a thing of beauty.

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now. Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”. Both agreed. What has occurred as a result is nothing short of incredible. Understandings have been forged, exchanges of ideas and beliefs have been made. They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer… Many people take these types of conversations for granted. But we do not.

Imagine… Imagine that from the moment you were born every aspect of your being was evaluated and studied with a critical eye. Imagine that who you were, the way you spoke, moved and behaved was seen as deficient. Imagine that from an early age you were talked about as though you didn’t understand and even if you did not fully understand everything said, you understood the emotions behind the words, the disappointment, the fear, the anger, but you had no idea why you had caused such a response. Imagine how that would make you feel. Now imagine how you would feel if you understood every single word uttered, but you could not speak or make it known to others that you understood. Imagine how you’d feel if you grew up believing your very existence caused others discomfort, pain and suffering.

Imagine that as a small child you were assaulted by light, sound, touch, odors, taste, things that did not cause others pain, but that made your life almost unbearable. Imagine that you also felt people’s energy intensely but were often confused and overwhelmed by these feelings. Imagine that when you cried in distress you were greeted with anger, confusion or were told nothing was wrong and to stop behaving this way. Imagine how you would feel when you finally located the correct words and spoke them, people misunderstood you, became angry with you or you were told the tone you used was “wrong”, inappropriate or the volume with which you spoke was too loud or too soft. Imagine trying as hard as you could to speak as you’d been instructed, but no matter how much you tried, you never seemed able to get it “right”. Imagine what that would be like.

Try to imagine how you’d feel if you mustered up the courage to connect with another human being only to be shunned, teased or rejected and told to go away. Imagine what it would be like to want to have friends and play dates and sleepovers but you had none. What if you tried to make friends, but when you tried to connect you weren’t able to and didn’t know why. What if your attempts to be friendly were seen as acts of hostility. What if you punched someone on the shoulder because you’d seen friends do that to each other, but when you did it you were taken to the principal’s office, reprimanded and threatened with expulsion. How would that make you feel?

Try to imagine what it would be like if the few things that brought you joy were stopped or taken away from you. Imagine if you loved nothing more than to jump up and down, that this motion made you happy and calm, but when you did this you were punished. Just imagine what it would be like if the things you found fascinating were ridiculed and joked about. Now imagine that you are unable to make words form in your mouth so that you could say anything to explain or protest. Or imagine what it would be like if you were able to speak and when you did, you were told your words were unacceptable. You were threatened with punishment and institutionalization. Take a moment to really imagine how that would feel. Imagine what it is like to need help, to have to rely on people and to have those people hurt you, betray you, get angry with you over and over again.

Just imagine how it would feel if experts talked about your neurology as a deficit. Imagine how it would feel to be told over and over that you were neurologically incapable of understanding what another person feels, and that you couldn’t truly understanding your fellow human beings. When you suggested you felt a great deal, when you talked about how painful it was to look directly into people’s eyes because it was like seeing into their souls, or when people went to hug you it made your skin crawl or the odor emanating from the other person was too overwhelming, imagine what it would feel like to have people suggest you should just try harder or that you should do it anyway. Imagine just for a moment how you’d feel if those same people then accused you of being difficult and told you it was impossible to have a “rational” conversation with you or you were told you were rude when you confronted them with their insensitivity. Imagine what it would be like to be dismissed and silenced over and over again. Just try to imagine what that must be like.

Like this:

In Judy Endow’s book, Paper Words, she describes the process she went through to communicate. She writes about the “bridge pieces” or information storage system she experienced, “Then world-people might see the little bridge pieces stuck onto the sides of all these stone islands.

“Bridge pieces just hanging there serving no purpose (other than to underline the fact that a bridge was meant to be there, but isn’t) little bridge pieces going nowhere with gray -matter g a p s where the bridges should be.

“Perhaps then the world-people might come to understand that even though she may know all the info that’s needed to answer their question or to produce a reciprocal response to keep up with her part of their conversation, sometimes it takes a lot of her time to jump in a boat and float around in that gray-matter space of her mind floating in the g a p s trying to find all the right islands of stone that might hold any relevant data pertinent to the subject at hand.

“Sometimes it’s a cumbersome task to access information in this manner and at other times it is downright impossible.”

Judy’s book is incredible on so many levels and I hope she will forgive me for butchering the placement of her words, because my blog would not allow me to replicate what she does in her book. However, I will try to explain. She literally breaks the sentences apart in meaningful ways. There are the words she’s writing, but there is another layer of meaning to be gleaned from her words, and that is how and where she places the words on the page. As an example of the above quote, these words are placed in such a way as to create islands of words, separate from each other and yet the meaning overlaps, but the placement of the words (the islands) do not. This requires the reader to visually leap from one island of words to the next, just as she describes her thought process must do. It is a wild experience to read in this way and further illustrates her struggles with “bridge pieces” (information storage), “gaps” (information processing), and canoe transportation (information retrieval).

In her chapter entitled,”People Are Not Interchangeable” Judy Endow writes, “…meaning that if PERSON ONE has a conversation with her today …then tomorrow she can’t speak her response to PERSON TWO even if both persons belong to the very same group sometimes when she knows what she’s talking about and the person to whom she is speaking acts like he doesn’t understand her the first thing she does is to repeat herself saying her exact words over but if the person still acts confused she begins to wonder… this may be one of those times when she needs to be talking to PERSON ONE but because both of them are in the same group it somehow makes perfect sense to her to be talking to PERSON TWO but this kind of mistake rarely works out so she must always remember the rule that she made for herself: “People are NOT interchangeable.”

Again I couldn’t duplicate the arrangement of these words on this blog, an arrangement that serves to visually recreate the issues she describes having.

As I read Judy’s powerful book it was impossible not to reflect on my daughter. How often has she said something that I did not/ could not understand? How many times has she spoken to me about something or someone who I didn’t understand the context of, but that she seemed to know and understood me to know as well. Only I did not. How many times did I think – what am I missing? And now I wonder, was she speaking to me, assuming I was PERSON TWO, while PERSON ONE might well have known exactly what she was referring to? How many times have I been PERSON ONE and then explained to PERSON TWO what I thought was meant?